After Cancer Diagnosis

If you or a loved one has been newly diagnosed with a gastrointestinal (GI) cancer-that is, cancer of the esophagus, liver, gallbladder, bile duct, pancreas, stomach, small intestine, colon, rectum, or anus-this can be a time of anxiety and uncertainty for you and your family. However, it is also a time for action. In making sure you receive the treatment and support you need to meet the challenge of cancer and its treatment, there are several key steps for you to consider:

Choosing Dr. Right

If you are facing a diagnosis of gastrointestinal (GI) cancer, you will need the care of a highly skilled and experienced doctor, in fact, a team of doctors. Depending on the type of cancer you have and where you live, you will most likely first need to choose a cancer specialist, or oncologist.

The Oncologist

Choosing the right cancer specialist, also called an oncologist or medical oncologist, is an important first step in fighting your disease. While many doctors will be involved in your care, in most cases, the oncologist will assess your health, make treatment recommendations, and coordinate your care with all other doctors. In other words, the oncologist often will serve not only as your cancer specialist but also as the quarterback of your medical team.

In choosing an oncologist, you will need a doctor who is highly skilled and experienced in the treatment of your specific type of cancer, and who is compassionate and able to communicate with you and your family effectively.

How do you find such a doctor? You may be limited to the oncologists who participate in your insurance coverage plan. Even so, there are several steps you can take to identify the oncologist who is right for you:

Referral from your doctor. Be sure to ask your current doctor-whether he or she is a primary care, gynecologist, gastroenterologist, or other doctor-whom he or she would recommend to provide your cancer care. Your doctor should know of a highly qualified oncologist who has experience treating your specific type of cancer.

Board certification. Each specialist is board certified in his or her area of expertise. If your doctor refers you to an oncologist, you may wish to check with the American Board of Internal Medicine or the American Board of Medical Specialties , to ensure the oncologist is certified in medical oncology.

ASCO membership. The American Society of Clinical Oncology, called ASCO, is a highly esteemed professional organization of cancer specialists who require high standards for membership. You can check the ASCO to search for an ASCO member practicing in your area.

Hospital/university affiliations. Another important method to identify a good oncologist is to seek out a large university-associated teaching hospital or cancer center in your area. Not only do such hospitals frequently offer great expertise in treating cancer, but the most experienced oncologists are often affiliated with such institutions. If you live far from a university-affiliated hospital or cancer center, you may wish to travel to be evaluated by an oncologist at this facility; then ask the oncologist to coordinate your care with a doctor who lives closer to your home.

First impressions. The first meeting you have with an oncologist (or any doctor) provides you with a wealth of information in deciding whether you want to become his or her patient. For example, when you see the oncologist, is he or she friendly and responsive to you-or is he or she preoccupied and in a hurry? Does the doctor explain things clearly and encourage you to ask questions? Does the doctor listen to you, treat you with respect, and show an interest in your emotional health? Is he or she willing to refer you to a colleague for a second opinion? The best doctors of any specialty are able to comfort and communicate with their patients and their families. They are interested in treating the whole person, not just the cancer. If these qualities are not present in your doctor, you may wish to start shopping for another.

Questions to ask. It may be helpful to make a list of questions to ask of your oncologist and other doctors. In addition to questions about your disease and treatment, you might also ask: How much experience do you have in treating my specific type of cancer? How many patients with my type of cancer are seen at this treatment center? Are the other doctors and healthcare professionals I will need available at this treatment center? A good doctor will be more than happy to answer these questions for you and your family.

The Surgeon

Depending on the type and stage (extent) of your cancer, you may also need a surgeon. There are many types of surgery to treat different GI cancers, and it is important that you choose a surgeon that is experienced in performing the specific type of surgery that you will require. The checklist for finding a good surgeon is similar to that of finding a good oncologist:

Referral from your doctor. First, your oncologist or gastroenterologist should be able to refer you to a highly qualified surgeon, experienced in performing the specific type of surgery you need.

Board certification. Each specialist is board certified in his or her area of expertise. You will need a surgeon who is board certified, and who frequently performs the type of procedure you will require. If your doctor refers you to a surgeon, you may wish to check with the American Board of Surgery or American Board of Colon and Rectal Surgery to ensure that he or she is experienced not only in general surgery, but in the type of surgery you will need.

Hospital/university affiliations. As with oncologists, highly qualified surgeons are often affiliated with a large university-associated teaching hospital or cancer center. Seeking out such a facility is one good method to identify a qualified surgeon in your area.

Questions to ask. It may be helpful to make a list of questions to ask of your surgeon. In addition to questions about your disease and treatment, you might ask: How much experience do you have in performing the type of surgery I will need? How many of this type of surgery are performed at this treatment center each year?

Other Specialists

In addition to your oncologist, a number of other medical specialists will be involved in your care. Depending on the type and stage (extent) of your cancer, these may include a gastroenterologist, radiologist, pathologist, radiation oncologist, anesthesiologist or neurologist, and others. Some of these professionals will care for you directly, while others will play their role behind the scenes. Once you have found an oncologist or surgeon you respect and trust, he or she will be able to coordinate your care and ensure that a highly skilled and experienced team of medical specialists is caring for you and your family.

Choosing a Treatment Facility

Your choice of hospital or treatment facility is as important as your choice of doctor-and one that will set the course of your fight against GI cancer. In selecting the location of your cancer treatment, several factors are helpful to consider:

Key Considerations

Accreditation. Quality hospitals and treatment centers are routinely evaluated and accredited by the Joint Commission on Accreditation of Healthcare Organizations (JCAHO). If a facility is accredited by JCAHO, this means the facility has met JCAHO's standards for quality care. Accreditation information can be obtained by calling the hospital directly, or checking the JCAHO website . In addition, the American College of Surgeons (ACOS) provides accreditation to facility cancer programs. ACOS accreditation information also can be obtained by asking the facility directly or checking the ACOS website.

Cancer programs. The treatment facility may have a program for your type of cancer. This means that qualified oncologists, surgeons, gastroenterologists, and other medical and support professionals will be on staff to coordinate and administer your treatment and follow-up care.

Volume of care. Research shows that hospitals performing certain procedures frequently have greater success rates than those performing these procedures infrequently. The treatment facility you choose should have a high volume of patients with your type of disease, and perform a high volume of the type of surgery and/or other treatment you will require.

National ranking. Each year, US News & World Report ranks the nation's hospitals. You can check for a highly ranked hospital in your area on the US News website.

Types of Facilities

In addition to these factors, it is also important to consider the type of facility you prefer. There are many types of hospitals and treatment facilities, and each has a different definition/function:

University-affiliated facility. A hospital or center affiliated with a teaching university or medical school can offer the latest in cancer treatment and care, quality healthcare professionals, and access to clinical trials. However, your doctor may be accompanied by medical students or "fellows" when he or she cares for you. If you do not live near such a university-affiliated facility, you may need to travel for your care or consult with a doctor at this facility but receive your treatment at your local hospital or treatment facility.

Comprehensive cancer centers. National Cancer Institute (NCI)-designated comprehensive cancer centers offer the latest in cancer diagnosis, treatment, and education and outreach. These centers include the latest treatments, experienced healthcare professionals, and access to clinical trials. However, if you do not live near an NCI facility, you may need to travel for your care or consult with a doctor at the NCI facility but receive your treatment at your local hospital or treatment facility.

Clinical cancer centers. These cancer centers are also designated by the NCI, and offer the latest in cancer diagnosis, treatment, and clinical trials. However, they may not provide the same level of education and outreach services as a comprehensive cancer center. These centers include the latest treatments, experienced healthcare professionals, and access to clinical trials. However, if you do not live near an NCI facility, you may need to travel for your care or consult with a doctor at the NCI facility but receive your treatment at your local hospital or treatment facility.

Community clinical oncology programs. This is an NCI-designated program that is available at some local hospitals and treatment centers. This program allows these local facilities to work with NCI-affiliated researchers and institutions. If your local treatment facility has an NCI-designated community clinical oncology program, you may be able to benefit from participation in an NCI-sponsored treatment or clinical trial at your local facility.

Community cancer centers or hospitals. Some people who do not like to travel and do not live near an NCI-designated or university-affiliated facility, prefer to receive their care at their own community cancer center or hospital. Others prefer this option because they are comfortable with the doctors in their own area. If this is your preference, you may wish to ask your doctor to consult with a specialist from a nearby university- or NCI-affiliated facility. This way, you can receive your care close to home and still benefit from the latest treatment advances available at the university- or NCI-affiliated facilities.

There are several organizations that can help you to identify and evaluate a quality cancer treatment facility in your area, including:

Association of Community Cancer Centers (ACCC) - The ACCC provides a publication, Community Cancer Programs in the United States, that includes its evaluations of 670 hospitals, cancer centers, and group practices around the country. You can find an ACCC-evaluated cancer center in your area by searching the ACCC listing.

National Cancer Institute (NCI) - The NCI provides a list of its designated cancer facilities, by state. You can search for those facilities, by state, on the NCI website .

National Comprehensive Cancer Network (NCCN) - The NCCN is an alliance of the world's leading cancer centers, providing state-of-the-art services in cancer prevention, diagnosis, treatment, and research. You can search for an NCCN facility in your area on the NCCN website.

Your Rights as a Patient

Finally, in choosing a treatment facility, remember that you have a right to ask questions. The Patient's Bill of Rights, established in 1973 and updated in 1992, outlines 12 patient rights from your right to quality, to privacy, to the receipt of health information that is clear and easily understood. You also have the right to refuse any recommended treatment plan, and to be transferred to another facility upon your request.

Getting a Second Opinion

Today, getting a second opinion has become standard practice in medicine-especially when surgery or other major treatment is involved. In fact, some insurance plans require a second opinion. Second opinions are particularly useful in cases in which the diagnosis is clear, but the treatment options vary. You need not worry about upsetting your doctor when asking for a second opinion-most doctors will welcome another opinion. Indeed, if you find that your doctor is against your getting a second opinion, you need to find a new doctor.

Here are a few guidelines for you to follow when seeking a second opinion:

Be careful to get an independent evaluation from a doctor not associated with your current doctor.

Bring your medical records with you, or ask that copies be sent to the doctor providing the second opinion. These records should include all tests and pathology slides and reports.

During a second-opinion conference, ask the doctor such questions as: Why do you have this opinion? Why do you suggest this treatment? Is there anything you feel has been overlooked in my care?

Should the second opinion differ from the first, it might be wise to get your family doctor involved to give you advice, or ask the two doctors to explain their differences in more detail or justify the discrepancies between the two opinions. In cases like these, some insurance companies will also authorize a third opinion.

Using the Whole Cancer Care Team

When you are facing a diagnosis of cancer, it is important that you receive all the care and support you need to fight and cope with your illness and its treatment. That is why it is vital that you take advantage not only of your doctors' services, but the services of your entire cancer care team-before, during, and after your treatment.

Your GI cancer care team may include:

Medical Oncologist

This is a doctor who specializes in the diagnosis and treatment of cancer. In many cases, this is the doctor who not only will evaluate your health and make cancer treatment recommendations, but also will coordinate the care of the other doctors who will participate in your treatment plan.

Surgeon

This is a doctor who specializes in surgical procedures. This often involves not only the removal of cancer or abnormal tissue, but also assistance in staging (determining the extent of disease) and treatment planning. Your surgeon should have special expertise in the particular type of surgery you will require.

Radiation Oncologist

If you require radiation therapy as part of your treatment plan, a radiation oncologist will be part of your cancer care team. This is a type of doctor who specializes in both the treatment of cancer and the use of radiation therapy in that treatment.

Gastroenterologist

This is a doctor specializing in care of the GI system, including the esophagus, liver, gallbladder, bile duct, pancreas, stomach, small intestine, colon, rectum, and anus. Often, a gastroenterologist may be the doctor who initially diagnoses a GI cancer. For persons with a GI cancer, a gastroenterologist might also help to control GI symptoms, perform useful diagnostic or therapeutic procedures, and pain management procedures.

Pathologist

Any tissue that is removed during a surgery or other procedure is sent to a pathologist. A pathologist studies the tissue, and helps to determine the nature of the cells-for example, whether the cells are cancerous and at what rate they are likely to grow. Although you may never see your pathologist, he or she plays a vital role in your diagnosis, treatment, and follow-up care.

Radiologist

The radiologist helps to diagnose disease and to monitor the effect of treatment by obtaining and interpreting medical images from CT, MRI, ultrasound, and other types of imaging scans. The radiologist takes the findings of medical images, correlates them with other examinations and tests, recommends further treatments or tests, and consults with your doctor to provide the most appropriate care. Again, you may not see your radiologist, but he or she is essential in your diagnosis, treatment, and follow-up care.

Pain Management Specialist

For many people with cancer, pain management services may help not only in relieving pain, but also in functioning in their day-to-day life and maintaining a high quality of life. Depending on the type of pain you have, pain management may be provided by an oncologist, anesthesiologist, neurologist, radiation oncologist, surgeon, or gastroenterologist.

Nurse

Truly the angels of cancer care, nurses are responsible for implementing the plan of care ordered by your doctor. Nurses will provide you with a number of important services, including the administration of medications, monitoring of intravenous (IV) lines, and assessment of symptoms. Your nurses will also assess your pain level on a regular basis, and communicate this information to your doctor. Some nurses, called oncology nurses, have special expertise in treating people with cancer. Other nurses, called enterostomal therapists, are specially trained to help people who have a temporary or permanent colostomy (a surgically placed opening in the skin to allow elimination of body waste).

Registered Dietitian or Nutritionist

Both during and after treatment for a GI cancer, you will have special nutritional needs to help your body fight the disease and heal from the impact of treatment. In addition, cancer treatments (including surgery, chemotherapy, and radiation therapy) can cause side effects, such as difficulty chewing and swallowing, dryness of the mouth, loss of appetite, nausea or vomiting, water retention, constipation, and diarrhea. These side effects can sometimes make eating difficult. A dietitian can help you choose foods or nutritional strategies to help minimize treatment side effects and GI symptoms, and maximize your nutritional intake. If your recovery is prolonged and you cannot get enough nutrition from food, a dietitian may recommend that you receive nutrition intravenously during your hospital stay. This is called total parental nutrition, or TPN.

Physical Therapist

After surgery or other treatment for a GI cancer, you may experience a loss of muscle strength and fitness. A physical therapist is a specially trained health professional who can help you regain your strength after treatment through a carefully planned activity regimen. This regimen varies according to each person, but usually involves daily walking and active or passive range-of-motion exercises. This program will help to strengthen your muscles, improve your joint mobility, and get you back on your feet.

Genetic Counselor

A genetic counselor is a member of the cancer care team who is specially trained in the genetic, or hereditary, aspects of disease. If you or a family member has a GI cancer, a genetic counselor can help you determine your personal and family medical history, whether your type of cancer may run in your family, and whether you or a family member would like to undergo testing for a possible genetic abnormality. This type of counseling is important not only for the person who has cancer, but for the whole family.

Social Worker

When dealing with a cancer diagnosis, you and your loved ones may experience feelings of anxiety, fear, helplessness, and uncertainty. To help you cope with these feelings, a social worker can provide counseling to help you and your family, assist you in communicating effectively with your doctor and other health professionals, and direct you to clinical and support resources at your treatment facility or in your community. Your social worker can also help you set up various types of assistance at home, including visiting nurse services, physical therapy, and delivery of medical supplies and equipment.

Spiritual Counselor

Many people dealing with cancer turn to their spiritual beliefs as a source of strength and hope. Thus, for many people, a spiritual counselor-priest, rabbi, pastor, or other counselor-is an important member of their cancer care team. A compassionate spiritual counselor can help many people work through their emotions and beliefs, find renewed meaning in life, and address the difficult issues of death and afterlife.

Health Educator

A health educator is a member of the cancer care team who can help direct you and your family to educational resources and programs-about GI cancers, treatment, clinical trials, and support services-both at your treatment center and in your community.

Finding the Support You Need

When a loved one is diagnosed with cancer, it affects the whole family. To help you face this disease and its treatment, it is important to seek the support you need for yourself, your caregiver (usually a spouse, parent, or adult child), and your children. In seeking the resources you need, your cancer care team and your family and friends can be primary support systems for you.

Talking to Your Doctor

As you prepare to meet with your doctor to discuss treatment for cancer, it is important that you are able to get the answers to all of your questions about your disease, its treatment, and its potential effect on your life. For this reason, you may wish to write out a list of your questions before the appointment. These questions might include:

What treatment are you recommending for me?

Could you describe the treatment or procedure for me?

Why are you recommending this treatment?

What are the goals of this treatment?

What is the success rate of this treatment?

What will it cost?

What side effects can I expect?

How can these side effects be minimized or treated?

What are the possible complications?

How should I prepare for this treatment to reduce side effects and complications?

What sort of follow-up care will be required?

How will this treatment affect my day-to-day lifestyle?

May I meet with the nurse, social worker, and other members of my cancer care team?

In addition, you may wish to have a family member or friend attend your doctor visits with you. This is because it is often helpful to have an advocate with you-someone who can help take notes and make sure all of your concerns are addressed.

Relying on Friends

As you undergo treatment for cancer, you may feel fatigued and overwhelmed at times. While you may wish to keep your life as normal as possible, delegating certain tasks to friends can help lighten the burden on you-and, believe it or not, help your friends to feel more useful. For example, you may consider asking a friend to drive you to your doctor appointments, take your trash to the curb each week, or pick your children up from school. Allowing friends to aid you with such tasks helps you to focus on the important things and helps your friends feel that they are making a contribution.

Finding a Support Group

Talking with others who have had a GI cancer can be very helpful. Your doctor, nurse, or social worker can direct you to a support group at your treatment facility and in your community. A support group is a group of people who share a common experience-such as a GI cancer diagnosis-and meet regularly to share their experiences, concerns, and support. The connection you experience through a support group can help you to regain a sense of control, strength, and hope. Indeed, research has found that attending a support group can help increase quality of life in people with cancer.

Supporting the Caregivers

Cancer and its treatment can take a toll not only on the person with cancer, but also on the family member who cares for that person. That is why those who care for the person with cancer and his or her family need to remember that they need to take care of themselves, too. In addition to finding some personal time to rejuvenate, caregivers may find it useful to ask a doctor, nurse, or social worker to direct them to a caregiver support group in their community. Attending a support group with other caregivers allows them the chance to discuss their experiences and concerns-without the person who has cancer being present. In addition, sometimes caregivers can suffer from depression as they attempt to manage the family during this crisis. Often, a doctor can prescribe medication for caregivers to help alleviate their depression. Ultimately, caregivers need to seek out support as much for themselves as for their loved one with cancer.

Nurturing the Children

A diagnosis of cancer in a parent or guardian is something that is frightening and traumatic to a child. She is suddenly faced with the vulnerability and potential loss of someone whom she thought was invincible-her parent. Depending on a child's age and personality, he may express his feelings in a number of different ways-from withdrawal to regression (acting younger than he is) to anger. Some children may show no change in behavior, but this does not mean they are unaffected. When your child's parent or other loved one is diagnosed with cancer, it is important to consult with a pediatric social worker, child life specialist, or psychologist about how to discuss cancer with your child and how to support him or her in an age-appropriate way. Some children may benefit from seeing a counselor, or from talking with other children who have parents who are ill. Your doctor, nurse, or social worker can help direct you to these specialists and resources at your treatment facility and in your community.

Seeking Out Resources

In addition to finding support in your cancer care team, family, and friends, there are a number of wonderful organizations that provide information, programs, and support services for people who have cancer and their families. When you are seeking out such information and services, it is important to make sure they are offered by a reliable organization or source.